Submission of the New Zealand Human Rights Commission to the 18 th session of the Human Rights Council; New Zealand’s Second Universal Periodic Review. Introduction 1. The IMM produced its first Annual Report in December 2013. The Convention Coalition has also produced two monitoring reports focussing on the perceptions of disabled people of the fulfilment of their rights. This submission is based on these three reports available at: http://www.hrc.co.nz/disabled-people/convention-on-the-rights-of-persons-withdisabilities/making-disability-rights-real http://www.dpa.org.nz/other-publications 2. The IMM recommends that all of the recommendations from its Annual Report for 2012 be considered for incorporation in cross-government Disability Action Plan. The following updates the information in the Annual Report and provides further commentary on the issues. Nothing about us without us 3. The CRPD requires that disabled people be actively involved in decision making processes that concern them through their representative organisations.29 The establishment of the IMM and the role given to the Convention Coalition reflects this requirement. However, the IMM is concerned that in other areas of Government activity, the principle has not been established as a habitual way of working. 4. New Zealand struggles to consistently provide effective support services to disabled people. A large part of the failure is due to the lack of governance involvement by disabled people and their families. The Social Services Select Committee Inquiry into the Quality of Care and Service Provision for People with Disabilities, which was established after many incidents of abuse, neglect and deaths in care, reported in 2008. It identified concerns about the quality, training and availability of staff looking after people with disabilities with complex needs and raised questions about the Government’s management and funding of the disability sector. Since then there have been a number of promising initiatives and trials around enabling good lives, increasing the housing options available to disabled people, and improving the way Ministry of Health supports are delivered. But progress has been slow in implementing the enquiry’s recommendations. At time of writing, after several new instances of abuse, neglect and criminal assault in residential care facilities, the government has launched yet another inquiry into the way disabled people are being treated. 5. The passing of the New Zealand Public Health and Disability Amendment Act 2013 (NZPHDAA) is further cause for concern. The need for the Act arose out of longstanding legal action by a group of families including adult children with disabilities. The Court of Appeal, in Ministry of Health v Peter Atkinson in 2012 affirmed the right of parents to be paid as caregivers where the Ministry of Health has assessed a disabled person requires paid care.30 In response the Act limits the circumstances in which family members can be paid, the category of family member that can be paid (e.g. parents but not spouses) and imposes a payment system with a lesser pay rate for family than is offered to non-family members using a different delivery system. The Government has closed off further legal action on this issue by declaring that no further complaints can be made regarding the payment, or otherwise, of family members as care givers.31 The IMM sees both the payment regime and the removal of the rights of appeal to the courts as highly undesirable. Rather than fixing a previous inequality the IMM is concerned that the Act regularises a further inequality for disabled people and their families. 29 Article 4 (3) CRPD [2012] NZCA 184 31 Section 70E NZPHDAA 30 18